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Have you (or your loved one with T1D) been diagnosed with neuropathy?
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My neurologist and endocrinologist work together with relevant information after visits. My neuro has not seen any signs of neuropathy. Hopefully it stays that way!
Neuropathy from taking statins, not from diabetes!
I have lost the sense of touch on the tips of the index and middle finger on both hands to neuropathy. It feels like I have super glue on them.
common side effect after 70 yrs of T1
Diagnosis is the easy part. It’s what you do afterwards to manage that’s extremely challenging.
There are several types, almost all caused by frequent and long term glycosylation.
I had what felt like neuropathy as a pre-teen (11-12 yrs old) after 5-6 years with T1D. Never diagnosed with it. Excruciating burning/pins and needles on bottoms of my feet. I was a very active child. By age 14, if I recall, the pain had disappeared and never came back.
I thought I had diabetes-related neuropathy when i was in my 40’s (pins and needles sensation in my feet) but it turned out to be a vitamin B deficiency that was easily remedied with a supplement. Now, I just have a mild loss of sensitivity to vibration in my feet, like most people who have lived with diabetes as long as i have.
I also was told I have a vitamin B (12) deficiency. Have been doing some research and it seems like several type 1’s mention this. I have a second autoimmune that is atrophic gastritis (sounds worse then it is!) It means my stomach doesn’t make acid anymore and B12 is no longer absorbed there through food or supplements. (aB12 shot or sublingual B12 fix it though). I wonder if many type 1s get atrophic gastritis and that explains the B12 deficiencies.. ( I’m probably just putting random things together).
That said, they still have me down as having “mild” neuropathy
Not sure if I have a diagnosis, but have some lower extremity numbness that comes and goes.
T1 60 years and Neuopathy has changed in severity and effect over time. Current loss of somr feeling and balance but 25+ years ago went through the “pins and needles” in legs and feet and hands.
I have what I call mild neuropathy. Instead of pain I get the “itch from hell” for about ten minutes at a time in my feet. I can’t drive then and have to pull over because I want to jam my foot into the pedal! Mild scratching fights it until it is gone. Every time, I think “at least it’s not pain, at least it’s not pain”.
I unfortunately have been. I take ALA to help with it but when I was diagnosed with Stage 3 breast cancer, one of the drugs in my chemo regimen also had neuropathy as a side effect. After it was stopped I did regain the sensation back from my shoulders to wrist and hips to ankles.
Diagnosed with peripheral neuropathy about 30-35 years ago, and with autonomic neuropathy about 20 years ago.
A younger brother diagnosed TYPE1 just months before me has numbness in his feet (and numbers from his kidneys are “off”), a cousin experiences neuropathy in feet, gastroparesis, and taking eye drops (former substance abuser 15 years T2d), my non-diabetic mother had neuropathy in feet and hands as well as cataracts (weight and heavy smoking?)
Nerve damage can be caused by other things as well as diabetes, combine these?
Yes. Peripheral neuropathy in my fingers and hands, toes and feet; and cardiac autonomic neuropathy. The peripheral neuropathy gradually manifested after 40 years of life with T1D. Cardiac autonomic neuropathy manifested in 2018 and required a pace maker. Have lived a full life with T1D in my body since November/December 1962. Will celebrate 70 year birthday in March … still alive, thriving, and kicking ass with T1D and it’s neuropathic consequences!
I haven’t but I also had a type1 cousin who definitely had neuropathy in her feet.